Jumping in with both feet

[mejohn1]

Happy Friday! This is my first post and am intrigued by this site; hoping it provides some help and direction. This will be long, but I figure as long as I'm going to reach out for help, I may as well give as much info as possible. I appreciate your reading this, and hope that I find people with similar experiences and we can help one another live with this God awful issue. So here goes.....
I've had seizures since I was 17, am now 44. I remember the first one pretty distinctly as I was working at a leather store in the mall, started to feel all weirded out, and felt my eyes start pulling to the left. I knelt down behind the counter and my head and eyes jerked together for about 10 seconds...then it stopped. I was wiped out but otherwise felt fine. Having no idea what had just happened I kept it to myself out of fear, and probably embarrassment. I don't know how long it was before it happened again, but they did over the years. I've always gotten "auras", sometimes they last all day but nothing further happens. The aura's feel like I'm slightly out of body, like life is happening in 3rd person, but the people I'm interacting with may never see a difference in me. It's so weird! I also have deja-vu, a LOT. I've grown to rely on the aura's as they have given me the time to avoid danger and get safe. But not always....there have been 3 occasions where I locked up the brakes in the middle of the road as it came on so fast I could do nothing else. Talk about scary as he**! These "episodes" were very sporadic, I could go many months with having nothing, then could have a dozen in a day. There appeared to be no rhyme or reason to it. I also never blacked out, never fell over, didn't get nauseous, didn't get headaches....just eyes jerking hard to the left (which can hurt after a while), along with my head. And I always felt very tired afterward.
When I was 30, my wife insisted I get tested and began the process by going to a neuro. I went through the hole battery of tests, from being brushed with a feather and poked with needles, to 24 hr eeg's. Since then I've also had 2 MRI's, more EEG's, and am currently looking at a 3 day monitored EEG. Ugh. Nothing....not once...has shown any sings of anything. MRI was "normal", all EEG's show normal activity. Med's havent stopped it (been on Tegretol and Keppra). Just yesterday I had 3 what I call "little ones", where I have to stop what I'm doing and just suffer through it for minute.
3 Months ago I had a grand mal, the only one I've ever had. I had a cold and took an hour over lunch to stretch out on the couch. I remember being face down on the floor with my eyes jerking harder and farther than they ever had, but that's all I remember. When I woke up, I was on the couch..weird right?? My body hurt and I realized I had wet myself so I went to the bathroom and saw that my nose was all purple and bruised and all of the blood vessels around my eyes were blown. Not on the cornea, but the eyelids and below; looked like I lost a battle with Tyson. I had also chewed my tongue into a mess. Scared the heck out of me.
I've been seeing a new neuro since and am really going after why these happen and how to stop them. State law requires no driving, and I lied about it for years. I'm a sales rep, and a good one, and am on the road 4 days a week. The grand mal woke me up and I haven't driven since; and it's cost me my livelihood. My wife died 4 years ago, I'm a single dad of 2, and now this.... Needless to say I hate epilepsy, I hate the fact they say they can't find anything wrong with me, I hate the all the drugs do is make me tired and grumpy, and I hate that I'm 99% healthy but the 1% of me that's not is costing me so dearly. Yes, I'm in pitty city right now, but dang it, this...just...sucks

Thanks for letting me ramble

 

[Nakamova]

Hi mejohn1, welcome to CWE!

I'm sorry to hear that epilepsy (and the meds) are hitting you hard right now.

I hate the fact they say they can't find anything wrong with me.

If that's what “they” are saying, then you need to find a new neuro. The EEG tests can be helpful to confirm an epilepsy diagnosis, but they are only supplemental -- and many people with epilepsy never have a positive EEG. A good neurologist should be able to diagnose epilepsy based on your clinical symptoms alone. And your symptoms are extremely straightforward and textbook, so the diagnosis is clear. If the meds are causing intolerable side effects, ask the neuro about making a switch -- keppra in particular can make folks extra-grumpy. If you aren't already, you might try adding a B6 supplement to help with the mood-related stuff.

I'm sorry that you are unable to drive, but I know that you know that the risk of injury to yourself or others makes this a necessity. I hope that your friends/family are supporting you and your children as you deal with the constraints that epilepsy has imposed.

And I'm glad you've found us! CWE offers a lot of support too. Members are awesome, and truly "get it" about how epilepsy messes with us.

Best,
Nakamova

 

[rich956]

Welcome to CWE

Sorry this is alittle late . Iam also a widowed single parent to a child.
feel free to talk or vent here. its all good !

 

[jyearta]

Hi,

I sorry for all you are and have gone through.

I went through I don't remember how many Neur, all the test you mention, they all came normal, until I went to a teaching hospital, then it showed to area of my brain where they originate.

Keep asking questions eight here and at your Neur. till you get some answers.

I worked 22 years, manager in acct. I haven't worked since 1996, I get embarresed with my spelling.

I trying to except that life doesn't go the way we plan. Don't get wrong 8 have had my share of pity party's .

praying you will get some answers.